Anyone else living with a disability?

[romanlili]

I was just wondering how many of us are living with some sort of physical disability. I don't mean for this to be a "poor me" thread. Just a chance for us to learn more about each other and other disabilities. Also, if there is a disability that you have some questions about, maybe this would be the place to ask.

So, I have Narcolepsy. It's not what the movies make it out to be and frankly it is a PITA. I am ALWAYS tired. And I know most people will say they get tired too. But trust me, not like this. There are days were it is actually physically exhausting for me to have to repeat myself. If I say something and I have to repeat it, I will actually have to stop and gather my thoughts and energy and say it again. If you would like to know more about Narcolepsy this link is really good. http://health.nytimes.com/ref/health/healthguide/esn-narcolepsy-ess.html

Also, this link has clips of people talking about narc. They explain really well how I feel on a daily basis. http://www.nytimes.com/interactive/2009/08/26/health/TE_NARCOLEPSY.html

So, ladies (and fellas?) share with us (if you feel comfortable doing so).

[Jenninar83]

Multiple sclerosis (RRMS currently) and hypopituitarism . I have great days and I have rotten days where I just hurt all the time, can barely walk and can't think, but I'm just grateful for every good day that I am blessed with.

[ceelynncee]

I have severe hearing loss. It is a family trait. I have been fitted twice with aids but they are not really useful for my particular loss. It is becoming more of an issue for me as I age because of the hearing loss associated with aging on top of my hearing loss. I have to fight a tendency to isolate myself from public,it is very tiring trying to discern lip movement and body language and catch whatever speech I am able.

[Carly]

I have lupus and fibromyalgia plus now a back injury. It is a PITA for me too. I have good days and bad. I am thankful that I haven't had any organ issues yet though! :hugs: We can all lean (gently) on each other for support!

[GGisShort]

I have fibromyalgia, chronic fatigue syndrome, disc degenerative disease, lots of problems from a herniated disc at L5-S1 and a few other "minor" problems. I know what you mean about the exhaustion. I think of all the problems I have and it is the exhaustion that is the worst. I feel like if I could ever feel like I was not so tired that I could fight my other symptoms and deal better with everything. People don't understand me when I say that I am tired. They don't get it.

[romanlili]

:hugs: Thanks for sharing ladies!

I was also diagnosed with fibromyalgia when I was 15. I had one doc tell me it was probably the narcolepsy. But I'm not sure how the pain associates with narcolepsy.

[snookemz]

fibro, degenerative disc disease, fusion at T12 L1 (just had a decompression done at the fusion almost 2 weeks ago), MS (which I don't really talk about much because people have this idea in their head that MS is something horrible and makes me incapable of doing anything and its NOT!), I have very little control of my right leg from the knee down from nerve damage and my left leg is the same but not as bad (all from the compression that lead to my fusion surgery) - that's the general idea. I'm working on getting disability right now. I've been turned down once a couple of weeks ago (right before my last surgery or right after, I can't remember) - oh and I have really horrible memory loss from all the anesthesia - my short term memory is crap.

Somedays I really do feel sorry for myself and I feel like "why bother" with every day stuff (but I've also been dealing with depression for a good 13 years) but for the most part, I'm ok. I deal. I find ways to work with my disabilities and to make my life work. But I can honestly say, if I knew that I would have all these problems, I probably wouldn't have had my daughter. She was 7m old when I had my first spinal surgery and its not really fair for her to have a mommy who can't do as much and who can't pick her up everytime she needs it. She doesn't know any different at this point, but I do feel bad for working so hard TTC her just to be this limited.

[dubhreubel]

Fibromyalgia/CFS and scoliosis here, along with some damage I've done to my body over the years (chronic injuries) I have to agree with you guys about nobody "getting" how tired I actually am... Nice to know I'm not the only one having babies with a disability!

[Jenninar83]

:hugs: ladies

Have y'all read this? I have a print of it in our computer room. It really hits the nail on the head about what we go through.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com (http://www.butyoudontlooksick.com/)
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Christine Miserandino Butyoudontlooksick.com

[snookemz]

have any of you had muscle activation techniques done on you? My PT came by today and did them and omg it made a huge difference right off the bat BUT it hurts like hell!!!! There were some areas that I told him "You touch me there again and you die, got it?" cause it hurt SOO bad (mainly around my fusion)
I don't know what I think of it yet, its just one session so far but if he keeps doing it and it keeps working then I'll be a believer

[romanlili]

Wow, that spoon theory pretty much made me cry. Some days I really do forget that there are other people out there who feel like I do.

Emz, you mentioned that if you had known you might not have had your daughter. I feel you there. We had to plan my pregnancy very carefully (because of going off meds and without my meds I can't drive or even function. So add that to normal pregnancy issues). My neurologisht and Pulmunary specialist both looked at me like a case study because they had never had a narcolepsy patient be pregant before. Luckily for me pregnancy did wonders on me. I had more energy then I had had in years. Being pregnant made me healthier. I only wish I could harness that some how for everyday.

But now that I am not pregnant it's bad all over again. Sometimes I have to walk away from dd and say "mommy loves you, but she just can't right now." It makes me feel like such a bad mom.

Okay, this is not a poor me thread (just reminding my self that).

Oh also, I use to see a chiropractor regularly. He did wonders for my migraines and some of my other pains. I also had a massage therapist who knew where not to touch me.

[Shaineinok]

Sort of, though I don't get disability for it. I have a rare eye disease. Its Punctate Inner Choroidopathy a form or Uveitis which is an auto immune disorder. I have very limited vision and my eyes hurt.

[romanlili]

Sort of, though I don't get disability for it. I have a rare eye disease. Its Punctate Inner Choroidopathy a form or Uveitis which is an auto immune disorder. I have very limited vision and my eyes hurt.

What does that mean? I mean I could google it but I wanted to ask you.

The studies they are doing now with narcolepsy are showing it may be an autoimmune disorder.

[Shaineinok]

What does that mean? I mean I could google it but I wanted to ask you.

The studies they are doing now with narcolepsy are showing it may be an autoimmune disorder.

Autoimmune means your body is attacking itself. In my case my body is trying to reject my eyes. They will eventually put me on a immune suppressant therapy in an attempt to save my sight.
Here is a link to my doctors page about my condition, he also talks a bit in the beginning about how autoimmune diseases work, you might find it informative.
The form i have attacks the retina.
http://www.rcoklahoma.com/Uveitis.html

[*Cassie*]

is pregnancy a disablity?? I know I can't do somethings I could before. :D I don't have any if it isn't though. I do have extremely bad eye sight and carpal tunnel but that's about it.

[dubhreubel]

I love the spoon theory, it's helped me explain things to people many times... Sometimes you need a bit of understading, kwim?

[romanlili]

Autoimmune means your body is attacking itself. In my case my body is trying to reject my eyes. They will eventually put me on a immune suppressant therapy in an attempt to save my sight.
Here is a link to my doctors page about my condition, he also talks a bit in the beginning about how autoimmune diseases work, you might find it informative.
The form i have attacks the retina.
http://www.rcoklahoma.com/Uveitis.html

Thanks for the link. I will do some reading when we get home from supper.

I knew what the autoimmune thing meant. Cause I guess my immune system has attacked a part of my brain causing the narcolepsy. :twitch:

I love the spoon theory, it's helped me explain things to people many times... Sometimes you need a bit of understading, kwim?

Exactly!

[~Isme~]

Are we only talking about physical disabilities here?

[romanlili]

Are we only talking about physical disabilities here?

Not if you want to talk about something else.

[Spring]

Another Fibromyalgia / Chronic fatigue sufferer here. I've had it for around 15 years and was only recently diagnosed.

I'm in the process of trying to find a good neurologist, as my GP and my pain mgmt. doc haven't been a lot of help.

I'm also hoping I can get one of my docs to write up a recommendation that I work from home part time. I used to be able to, but they moved me to another department and my new boss is a bit of a control freak and refuses to let anyone work from home. It's a big deal, because my commute is an hour each way. That costs me a lot of spoons. It's taken a big toll on me. :(

[-Blair-]

:hugs: This thread was really informative, and I really needed the spoons story to understand. Thank you for posting that.

[MomaJess]

I am not on disability, but I have moderate psoriasis and psoriatic arthritis. The psoriasis I have had for about 10 yrs and the arthritis part only a year or so. After getting the mirena I believe it caused a major flare of the PA and now my hips and knees and shoulders hurt so bad I have to take a LOT of ibuprofen to get out of bed and continue moving throughout the day. I am getting the Mirena out next week. I hope the PA calms down once it is gone.

[dubhreubel]

I am not on disability, but I have moderate psoriasis and psoriatic arthritis. The psoriasis I have had for about 10 yrs and the arthritis part only a year or so. After getting the mirena I believe it caused a major flare of the PA and now my hips and knees and shoulders hurt so bad I have to take a LOT of ibuprofen to get out of bed and continue moving throughout the day. I am getting the Mirena out next week. I hope the PA calms down once it is gone.

:hug: gl with that mama! I hope it works! I don't use hormonal bc for that exact reason, it makes everything go wacky!

[Flowerchild]

I'm extremely asthmatic. I don't normally think of it as a disability except during times, like now, where I can barely do anything because I can barely breathe. I'm having a hard time keeping it under control lately. It's the changing season, I'm sure. I am having trouble getting up to play with my son or even clean the house.
It doesn't affect me as much as an adult as it did as a child. Part of my asthma is exercise induced (it's also changing season induced, cold weather induced, pollen induced, mold induced, cigarette smoke induced....) and it kept me from participating in sports or any other physical activity when I was younger. It kinda sucked to me "That kid" who sat out all the time. Currently it is also keeping me from exercising, so it's even harder to get into prepregnancy shape.
Not being able to breathe is frightening and a major PITA. I had an aunt who died from an asthma attack. It really scares me.

[redfishbluefish]

:hugs: to everyone.


I don't know if it'd be considered a disability or not but my left hand isn't completely usable :cry: I severed 2 tendons and knicked another in Jan. this yr and had to have surgery. It won't work correctly now and it hurts occasionally. :(

[TyAndCheyMommy]

Not sure if I am under the disability title... I have 3 brain tumors and a failing liver... Most days I do good to just wake up in the morning... but I push through- feeling awful because of all the things I am not doing with my kids...
But then I think about my daughter... she has gone through so much more than me- and is still a very happy child! She has Cerebral Palsy- and has almost no control of any muscles- yet she has figured out how to do things like crawl and talk (things they said she would never do)... She gets tired alot more quickly than my DS- but she still tries to do more.
I think my kids are the only thing that keep me getting up out of bed every day!!

I really like the spoon theory!! Thanks for sharing that!

[crochetfrog]

First off :bighug: to everyone!

I don't know if what I have is considered disabilities or not. I have carpal tunnel due to my crocheting and knitting, arthritis due to that too. I have degeneration in my knees. I had to have surgery to re-align one...they both sound like rocks grinding together when I walk on stairs, sit down, or try to squat. I'll probably have to have replacements when I'm in my 40's. Also arthritis there. Due to broken ankles I have arthritis in them too. I'm also flat footed so it hurts sometimes to wear shoes.

[Flowerchild]

First off :bighug: to everyone!

I don't know if what I have is considered disabilities or not. I have carpal tunnel due to my crocheting and knitting, arthritis due to that too. I have degeneration in my knees. I had to have surgery to re-align one...they both sound like rocks grinding together when I walk on stairs, sit down, or try to squat. I'll probably have to have replacements when I'm in my 40's. Also arthritis there. Due to broken ankles I have arthritis in them too. I'm also flat footed so it hurts sometimes to wear shoes.
I feel ya with the arthritis and flat feet! :hugs:

[redfishbluefish]

I also have arthritis of the knees. Always have :cry:

[Queen of pain]

I have tons of chronic pain, back and joints, and anxiety/depression.

[romanlili]

goodness we are all falling apart at the seams. I want to say thank you again for everyone sharing. I hope we can keep this thread alive. I know personally I would love to know how everyone is feeling day to day or just very now and then.
Posted via Mobile Device

[Spring]

I hope this thread can keep going too. I joined a fibro board, but it was overwhelming. I'm already at home here. :)
~~~~~~~
Forgot to mention I have SEVERE social anxiety. Like full blown panic attacks. Lexapro has brought it down to a manageable level, but murdered my libido. Go figure.

[Flowerchild]

I was just diagnosed with an upper respiratory infection. I can barely breathe. I'm on antibiotics. They wanted to give me the hardcore ones because it could kill me (because of the asthma), but I'm bfing, so I'm on amoxicillin. I'm sure it will work. I'm feeling a bit better.

[dubhreubel]

I hope this thread can keep going too. I joined a fibro board, but it was overwhelming. I'm already at home here. :)
~~~~~~~
Forgot to mention I have SEVERE social anxiety. Like full blown panic attacks. Lexapro has brought it down to a manageable level, but murdered my libido. Go figure.

I also joined a fibro board, not my style at all!

[romanlili]

I was just diagnosed with an upper respiratory infection. I can barely breathe. I'm on antibiotics. They wanted to give me the hardcore ones because it could kill me (because of the asthma), but I'm bfing, so I'm on amoxicillin. I'm sure it will work. I'm feeling a bit better.

Oh gosh! How are you feeling? I hope you get better fast!

[Flowerchild]

Oh gosh! How are you feeling? I hope you get better fast!
I feel so much better today. I can get up and walk today, it's great!

[romanlili]

I feel so much better today. I can get up and walk today, it's great!

I'm so glad!:hapdance:

[cammiesue]

I have crohns, and rhematoid arthritis - man can't spell you'd think I could spell the illness's I have ah well. Although right now everything is dormant because of the hormones from nursing. I am loving being able to do things and not being exauhsted all the time, and being able to eat what I want rocks too.

[snookemz]

I'm totally nervous. I'm 2.5weeks post op from my last back surgery. Tonight I was told "You know you're taking Cy to school and picking him up tomorrow, right?"
fuck no!!! I did NOT know!!! My anxiety kicked in full blown, I took valium and a cool shower to calm down.
Its not the drive, its getting Shae in and out of the carseat BY MYSELF!!! I can't bend diagonally. I just can't. It hurts in ways I can't describe and it weakens my back (since the surgery drilled away at the bone, its thinner and repeatative diagonal bending can be bad for me!!!) So once I calmed down, I got dressed, put on my AFO's and shoes and got the kids ready. It took probably twice the time it did pre-op. We needed apples anyway so I was gonna do a dry run and see if I CAN do this.
I had my dad separate the car seats - one on each side instead of having my kids close together where they can hold hands :cries: so that I wouldn't have to bend as much to buckle anyone.
I got them in and we ended up spending way too much time shopping and I over did it in a major way. By the time we got home (with me doing everything kid related alone) my back was spasming in a major way - I was trying to hold back the tears!!!
I BEGGED my parents to please just take Cy to school in the morning so I can rest my back!! PLEASE!! I'll get him in the afternoon!!!!
nope.
they won't do it.
So I took a soma to calm my back and then my mom starts in on me about "That shit makes you unable to take care of your kids!!!" umm no. I'm forgetful because of all these surgeries and the anesthesia and that's all. I'm forgetful with or without soma. All that happened was that I couldn't remember where I put something!!! She brought up something from last week when I was confused WHEN I JUST WOKE UP!!! omg I wanna cry. They truly do NOT understand. They have NO idea what kind of pain I live in.
I wish there was some way for them to GET it, just for one day - hell one hour. Just for them to understand the pain and stiffness, the spasms, the constant strains, how exhausted I am with my meds - I just want them to get it :(

Wish me luck ladies - I have to prepare the kid for school, load them both in the car and get the big man to school, then get him in the afternoon. Getting the baby in and out of the car is gonna kill me.

[Spring]

I'm totally nervous. I'm 2.5weeks post op from my last back surgery. Tonight I was told "You know you're taking Cy to school and picking him up tomorrow, right?"
~FARK~ no!!! I did NOT know!!! My anxiety kicked in full blown, I took valium and a cool shower to calm down.
Its not the drive, its getting Shae in and out of the carseat BY MYSELF!!! I can't bend diagonally. I just can't. It hurts in ways I can't describe and it weakens my back (since the surgery drilled away at the bone, its thinner and repeatative diagonal bending can be bad for me!!!) So once I calmed down, I got dressed, put on my AFO's and shoes and got the kids ready. It took probably twice the time it did pre-op. We needed apples anyway so I was gonna do a dry run and see if I CAN do this.
I had my dad separate the car seats - one on each side instead of having my kids close together where they can hold hands :cries: so that I wouldn't have to bend as much to buckle anyone.
I got them in and we ended up spending way too much time shopping and I over did it in a major way. By the time we got home (with me doing everything kid related alone) my back was spasming in a major way - I was trying to hold back the tears!!!
I BEGGED my parents to please just take Cy to school in the morning so I can rest my back!! PLEASE!! I'll get him in the afternoon!!!!
nope.
they won't do it.
So I took a soma to calm my back and then my mom starts in on me about "That ~POOP~ makes you unable to take care of your kids!!!" umm no. I'm forgetful because of all these surgeries and the anesthesia and that's all. I'm forgetful with or without soma. All that happened was that I couldn't remember where I put something!!! She brought up something from last week when I was confused WHEN I JUST WOKE UP!!! omg I wanna cry. They truly do NOT understand. They have NO idea what kind of pain I live in.
I wish there was some way for them to GET it, just for one day - hell one hour. Just for them to understand the pain and stiffness, the spasms, the constant strains, how exhausted I am with my meds - I just want them to get it :(

Wish me luck ladies - I have to prepare the kid for school, load them both in the car and get the big man to school, then get him in the afternoon. Getting the baby in and out of the car is gonna kill me.
:hugs: good luck! I'm sorry your family doesn't understand.

[bearista]

I have a chronic skin condition that isn't constant, but I've been dealing with it for 20 plus years. When it does flare it is gol-darn awful. Here is a pic (it is not me, but to get an idea) of what my hands look like currently.

http://findmeacure.com/wp-content/uploads/2008/03/dyshidroticdermatitisonhandslatestage.jpg

It also has attacked my feet. That was more painful and embarrassing than dehabilitating. The hands on the other hand make it very hard to type, change diapers, wash hair, cook, turn on the car, open things...you know pretty much everything you have to do to be a mom. Ugh.

Oh, and there is no cure and half of the dermatologists I have seen over the years didn't even know what it was :twitch: :banghead:
~~~~~~~
I looked at the pic again...and my hands look worse than that....that is mild. :(

[snookemz]

ooo Jess!!! have you found out what triggers it so you can manage that at least?? squirted it with magic boob juice? I'm so sorry!!! that looks so painful!!!

[bearista]

ooo Jess!!! have you found out what triggers it so you can manage that at least?? squirted it with magic boob juice? I'm so sorry!!! that looks so painful!!!

I do think I've found something that is helping...it is drying up currently which is a huge improvement.

I've been soaking them in water mixed with sea salt twice a day and putting a topical steroid cream on the blisters and bactroban on any that look infected. And I've been wearing cotton gloves when I'm out and at night and I wear plastic gloves over them when I take a shower...it is interesting :giggle:

Anyway, I think the trigger this time was our shampoo. So I've switched to california baby super sensitive. My hair doesn't care for it too much, but I've noticed a marked change in my skin since the switch 3 days ago. Feeling hopeful... :) Thanks for checking in :hugs:
~~~~~~~
I'm totally nervous. I'm 2.5weeks post op from my last back surgery. Tonight I was told "You know you're taking Cy to school and picking him up tomorrow, right?"
~FARK~ no!!! I did NOT know!!! My anxiety kicked in full blown, I took valium and a cool shower to calm down.
Its not the drive, its getting Shae in and out of the carseat BY MYSELF!!! I can't bend diagonally. I just can't. It hurts in ways I can't describe and it weakens my back (since the surgery drilled away at the bone, its thinner and repeatative diagonal bending can be bad for me!!!) So once I calmed down, I got dressed, put on my AFO's and shoes and got the kids ready. It took probably twice the time it did pre-op. We needed apples anyway so I was gonna do a dry run and see if I CAN do this.
I had my dad separate the car seats - one on each side instead of having my kids close together where they can hold hands :cries: so that I wouldn't have to bend as much to buckle anyone.
I got them in and we ended up spending way too much time shopping and I over did it in a major way. By the time we got home (with me doing everything kid related alone) my back was spasming in a major way - I was trying to hold back the tears!!!
I BEGGED my parents to please just take Cy to school in the morning so I can rest my back!! PLEASE!! I'll get him in the afternoon!!!!
nope.
they won't do it.
So I took a soma to calm my back and then my mom starts in on me about "That ~POOP~ makes you unable to take care of your kids!!!" umm no. I'm forgetful because of all these surgeries and the anesthesia and that's all. I'm forgetful with or without soma. All that happened was that I couldn't remember where I put something!!! She brought up something from last week when I was confused WHEN I JUST WOKE UP!!! omg I wanna cry. They truly do NOT understand. They have NO idea what kind of pain I live in.
I wish there was some way for them to GET it, just for one day - hell one hour. Just for them to understand the pain and stiffness, the spasms, the constant strains, how exhausted I am with my meds - I just want them to get it :(

Wish me luck ladies - I have to prepare the kid for school, load them both in the car and get the big man to school, then get him in the afternoon. Getting the baby in and out of the car is gonna kill me.

:hugs: :hugs: Sending strength vibes your way!

[dubhreubel]

ooo Jess!!! have you found out what triggers it so you can manage that at least?? squirted it with magic boob juice? I'm so sorry!!! that looks so painful!!!

this made me lol, because I've tried it for my psoriasis :toofunny:
I hope everything goes better than you expect today!
and bearista, have you tried homemade soaps and shampoos? thats what made the difference for me (psoriasis, obviously different than what you have, but who knows :) )

[Spring]

X posting from WWYD, hope that's ok, figured I might get more input here...

I have Fibromyalgia. It sucks.

Before I left for maternity leave I was working from home about half time. It was great. I was able to get extra sleep, didn't have to commute 2 1/2 hours a day, was able to rest during breaks/lunch.

I was just as, if not more productive at home than in the office. Never had a complaint from co-workers or clients. Everything was fine.

Wile I was on maternity leave they merged my department with another department, consequently, I have a new boss. New boss doesn't allow any of her employees to work from home. :twitch:

The added stress, less sleep, less rest, 2 1/2 hour commute every day, etc, had caused a massive flare in my Fibro. I have missed 5 days in the 3 weeks I have been back to work. It is not going well. I also have a teething baby, which does not help matters.

I hate to pull the ADA card. I don't want people to feel sorry for me. Plus since fibro is an "invisible" condition, I don't want everyone to think I'm just looking for special treatment. I never had to "use" my fibro as a means to get accomodations before. My old boss was great about me wanting to work from home. I never had to justify it with him at all.

But I'm going to burn out very quickly if things keep up the way they are. I'm considering getting a note from my doctor, and printing out this (http://www.jan.wvu.edu/media/Fibro.html) and asking for a meeting with the new boss. Problem is I know she already doesn't like me (she tried to take over our department for a long time) and she'd probably love an excuse to get rid of me.

OTOH, while the extra income is nice, we could manage without it right now. So it wouldn't be the end of the world if she did fire me, and if something doesn't give, I may have to quit before long anyway.

I don't know what to do.

[Carly]

How is everyone doing today? I am sick so that just adds to the ickiness but the weather here is terrible. Rainy and icky!

[dubhreubel]

I would put it to your new boss that with your fibro you need to continue working at home, its hardly fair for them to have changed your job so much that you can't do it while you were away on mat...

(sorry, nak)

and today I'm not doin so hot... I'm just stressed and in the middle of the worst flare up I've had since before I got pregnant!

[Spring]

It sucks, because I really used to love my job. And I was good at it.

Now I dread every day. And I'm less able to be a good mother and wife because I'm too drained from this damned office. And it's only been 3 weeks.

She just called me down and gave me a "verbal warning" about missing so much work since I've been back. I explained to her that I have an autoimmune disorder (I know it's not really, but it's hard to explain any other way) that was part of the reason I was working from home before. That it makes it pretty much impossible for me to work 40 hours a week in the office.

She reiterated her policy that she "does not allow anyone to work at home" but that we could talk about going to a part time schedule.

Only thing is I would lose my health insurance, which is 99% of the reason I'm working at all.

I hate to say it, but I think the fact that she is deaf has a lot to do with her refusal to allow people to work from home. She does not communicate with her employees over the phone, and calls people into her office for anything other than quick emails. I understand that, but it's really making my life and my condition unliveable. *sigh*

[dubhreubel]

I had a nurse tell me that fibro is being looked at as autoimmune in some studies... but I don't have the actual info...

What are the policies of the company/ laws in your state relating to job availability after mat leave? I would tell her that unless shes willing to make sure you keep your insurance on a part-time basis, she's going to have to work with you to make your job possible for you again

[Shaineinok]

X posting from WWYD, hope that's ok, figured I might get more input here...

I have Fibromyalgia. It sucks.

Before I left for maternity leave I was working from home about half time. It was great. I was able to get extra sleep, didn't have to commute 2 1/2 hours a day, was able to rest during breaks/lunch.

I was just as, if not more productive at home than in the office. Never had a complaint from co-workers or clients. Everything was fine.

Wile I was on maternity leave they merged my department with another department, consequently, I have a new boss. New boss doesn't allow any of her employees to work from home. :twitch:

The added stress, less sleep, less rest, 2 1/2 hour commute every day, etc, had caused a massive flare in my Fibro. I have missed 5 days in the 3 weeks I have been back to work. It is not going well. I also have a teething baby, which does not help matters.

I hate to pull the ADA card. I don't want people to feel sorry for me. Plus since fibro is an "invisible" condition, I don't want everyone to think I'm just looking for special treatment. I never had to "use" my fibro as a means to get accomodations before. My old boss was great about me wanting to work from home. I never had to justify it with him at all.

But I'm going to burn out very quickly if things keep up the way they are. I'm considering getting a note from my doctor, and printing out this (http://www.jan.wvu.edu/media/Fibro.html) and asking for a meeting with the new boss. Problem is I know she already doesn't like me (she tried to take over our department for a long time) and she'd probably love an excuse to get rid of me.

OTOH, while the extra income is nice, we could manage without it right now. So it wouldn't be the end of the world if she did fire me, and if something doesn't give, I may have to quit before long anyway.

I don't know what to do.

First off start looking at other job options.

Can you move to a different dept within the company? Perhaps someone else would allow you to work from home again?

[romanlili]

I went to donate plasma today (we really need the money) and they wouldn't let me because of my narcolepsy. They were worried I would fall asleep. I felt like giving them a long lesson in what narcolepsy actually is and how it works. Needless to say, I was a bit irritated.

[momma2j&g]

I am not on disability, but I have moderate psoriasis and psoriatic arthritis. The psoriasis I have had for about 10 yrs and the arthritis part only a year or so. After getting the mirena I believe it caused a major flare of the PA and now my hips and knees and shoulders hurt so bad I have to take a LOT of ibuprofen to get out of bed and continue moving throughout the day. I am getting the Mirena out next week. I hope the PA calms down once it is gone.


Me too. I have both and type 1 diabetes. I was on Enbrel injections that worked wonders before I got pregnant with my youngest. I wasn't allowed to take it while I was pregnant, so I was put on predinose (I can't ever spell that correctly!) The psoriasis wasn't back until after I had Gavin in December. I can't go back on Enbrel until I'm done nursing. There are days (most days) where I just want to take a potato peeler to my skin and start all over. It's embarassing (I haven't worn shorts all summer), it's painful and itchy. The PA isn't too bad most days, some days hurt more than others. My right thumb is almost at a 90 degree angle at the first joint. Looks rather loverly. My hands and wrists are so weak, I sometimes have a hard time picking up the baby. I have an extremely difficult time getting up off the floor. It's just so much fun.

[Flowerchild]

:hugs: for everyone!!!

[RockABuyBaby]

I have fibromyalgia, chronic migraines, horrible anxiety, and found out this year I've got cataracts...
I had juvenile systemic arthritis, though it is now 'dormant' the damage is done. It will be back... can't friggin wait! I was told I would be in a wheelchair by the time I'm 30. I don't think I will, or maybe that's just hope.
I am a beautiful piece of work :D oh yeh, I'm fat and my heart sucks...

I feel like a freakin pinata... hanging by a thread, getting tossed around by the wind and then having the *sheep* beat out of me... misshapen, deformed, things falling off... or out... ugh.

I really liked reading the spoon thing... it's a good way to explain things. I read in a book about Fibromyalgia to have someone write some things they love to do on seperate pieces of paper. When they have a little pile, they are to start talking about each thing, and what they love about it and blah blah blah, and as they are talking, you crumble up that paper and tell them they cannot do that ever again. It made me cry just reading it, because I thought about all the things I've had to give up, or find a new way to do.

[dubhreubel]

I'm surprised by how many mamas deal with diasabilities on here... I hope it makes all our babies stronger and more understanding :)

[snookemz]

It makes me sad that so many of us are messed up and dealing with these chronic conditions, but at the same time I'm REALLY happy to have people who I can relate to on several levels. On the fibro boards its all "poor me" or "you're all faking" or "You just need snake oil!" :toofunny: and I honestly haven't even considered another board for disabled people because its depressing.

Spring, I hope you get somewhere with using ADA - that's what its there for, but I told you how I feel on the other thread, its just not widely considered to be a disabling condition and the whole case by case thing...ugh. People (in general) don't understand that most of us have some really fantastic days (and I mean people in chronic pain in general) and then we have some really horrid weeks/months/even years. The fact that you even are able to work is awesome, but they might throw that in your face - go get on disability if you're REALLY disabled (and smack them if they say that, seriously). No harm in trying. Maybe your new boss just needs to be educated on this. Its not a lazy thing - its the only way for you to maintain being productive.

So those of you with older kids - how do you explain this all to them? I'm having a hard time explaining it to my almost-6-year-old. He knows I'm hurting a lot and he knows that I get really tired, he knows what happened in my surgeries - but its a lot to process. I'm frankly sick of hearing "Stop mom!! You're handicapped!!!" :twitch:


(and today is a bad day - its rainy/gloomy and my joints ache!)

[Spring]

I hurt everywhere today. I've about had it with my PM doc refusing to prescribe anything stronger than tramadol. I don't give a shit what is "current thinking" about opioids and fibromyalgia... they allow me to function dammit.....

*sigh* I'm trying to find a good neurologist.

Oh and I have tried Gabapentin, it makes me feel drunk. Can't try Lyrica because :loveshower:t interacts with my Lexapro...

[dubhreubel]

I hurt everywhere today. I've about had it with my PM doc refusing to prescribe anything stronger than tramadol. I don't give a ~POOP~ what is "current thinking" about opioids and fibromyalgia... they allow me to function dammit.....

*sigh* I'm trying to find a good neurologist.

Oh and I have tried Gabapentin, it makes me feel drunk. Can't try Lyrica because :loveshower:t interacts with my Lexapro...


I'm sorry it's gotten this far for you mama, I don't use opiods, but Damned right I would if I had to work, I wouldn't be able to otherwise!

Honestly, I've not heard much good about lyrica anyways... Nothing better than any other anti-depressant

[Spring]

It's stupid, because everything I've read about opioids and fibro says basically "patients say they work, doctors say they don't" Hello? Is the fucking doctor in my body? Or even at my house, which is cleaned and happy and peaceful when I have Vicodin, and a complete shambles when I don't?

[MBRL567]

its not a disability sort of say, but like crunchymama's. I broke a rib over a year ago and it still causes me pain. I mean some days i can hardly move. It certainly would keep me from working at a job where i need to stand for a long time thats for sure.

[dubhreubel]

It's stupid, because everything I've read about opioids and fibro says basically "patients say they work, doctors say they don't" Hello? Is the ~FARK~ing doctor in my body? Or even at my house, which is cleaned and happy and peaceful when I have Vicodin, and a complete shambles when I don't?

I think they say it doesn't work because it doesn't improve the situation, just covers it up, kwim? I kwym though, when I don't take the time to take care of myself, everything goes downhill really fast.......

[Spring]

I think they say it doesn't work because it doesn't improve the situation, just covers it up, kwim? I kwym though, when I don't take the time to take care of myself, everything goes downhill really fast.......

I know, but for me, it does improve things. It makes the difference between me being productive and feeling somewhere near my real age, and barely making it through the days....

[dubhreubel]

I know, but for me, it does improve things. It makes the difference between me being productive and feeling somewhere near my real age, and barely making it through the days....

I totally get it! I'm lucky I don't have to work, and have a helpful dh... So I can managa without meds, If I didn't have those things, darned right I'd be on opiates!

[romanlili]

How are some of my favorite mamas doing?

Today we went to Typhoon Lagoon and while I was walking up the stairs for one of the rides, I almost had a sleeping attack! I had to stop and hold the rope for a moment and try and get a hole of myself. I closed my eyes for a few moments and let it pass.

[dubhreubel]

I'm having a really rough week, but not doing to bad considering!!

How scary, I'm glad you got it under control so quickly! Did you have fun at typhoon Lagoon? (I assume a water park?)

[romanlili]

I'm having a really rough week, but not doing to bad considering!!

How scary, I'm glad you got it under control so quickly! Did you have fun at typhoon Lagoon? (I assume a water park?)

I'm sad you are having a rough weak!

But yeah, it is a water park at Disney. And I was really lucky. I think if I had forgotten my meds it would have been a lot worse.
~~~~~~~
its not a disability sort of say, but like crunchymama's. I broke a rib over a year ago and it still causes me pain. I mean some days i can hardly move. It certainly would keep me from working at a job where i need to stand for a long time thats for sure.

People often develop arthritis in places where they broke a bone. I've broken a few ribs and I get stings of pain every now and then.

[eapoosmama]

It seems you have already worked out your answer. Good luck and take care of yourself.

X posting from WWYD, hope that's ok, figured I might get more input here...

I have Fibromyalgia. It sucks.

Before I left for maternity leave I was working from home about half time. It was great. I was able to get extra sleep, didn't have to commute 2 1/2 hours a day, was able to rest during breaks/lunch.

I was just as, if not more productive at home than in the office. Never had a complaint from co-workers or clients. Everything was fine.

Wile I was on maternity leave they merged my department with another department, consequently, I have a new boss. New boss doesn't allow any of her employees to work from home. :twitch:

The added stress, less sleep, less rest, 2 1/2 hour commute every day, etc, had caused a massive flare in my Fibro. I have missed 5 days in the 3 weeks I have been back to work. It is not going well. I also have a teething baby, which does not help matters.

I hate to pull the ADA card. I don't want people to feel sorry for me. Plus since fibro is an "invisible" condition, I don't want everyone to think I'm just looking for special treatment. I never had to "use" my fibro as a means to get accomodations before. My old boss was great about me wanting to work from home. I never had to justify it with him at all.

But I'm going to burn out very quickly if things keep up the way they are. I'm considering getting a note from my doctor, and printing out this (http://www.jan.wvu.edu/media/Fibro.html) and asking for a meeting with the new boss. Problem is I know she already doesn't like me (she tried to take over our department for a long time) and she'd probably love an excuse to get rid of me.

OTOH, while the extra income is nice, we could manage without it right now. So it wouldn't be the end of the world if she did fire me, and if something doesn't give, I may have to quit before long anyway.

I don't know what to do.

[eapoosmama]

I suppose since I am legally documented with OVR as disabled I am considered that.

I usually just tell people I look normal on the outside and am humpty dumpty on the inside.

my long time issues have been
Hypoglycemia - cronic low blood sugar which usually makes my mornings very touch and go if I don't hit my first food combo's just right.

Hyperthyroid/Graves Disease -- Over active thyroid

I was a Ulcerative Colitis patient until I hemoragged out in the hospital with mega-toxic colon and I went into a critical emergency loosing my omentum (sp) and entire colon.
I have an ileoanal anastomosis J pouch reconstruction, and three nice ole hernias just to piss off my belly.

This summer I battled my first brutal 3 month infection of pouchitis. It is like having UC all over again. The testing yeilded that I am 45 with Osteopenia/Ostoperosis.

After 47 days in the hospital several blood transfusions, and emergency surgery that I almost died during, bad reactions to drugs and blood, organ loss, an ileous (paralyzed small intestines) a bowl obstruction, a resection surgery and a pnuemothroax from the hole the anesthesiologist punched in my right lung collapsing it and 9 months of recovery and then finding my husband dead two 1/2 years later -- you can add Post Traumatic Stress to my disorder list.

Over all I work it all pretty hard staying well. I work with a lot of natural approaches to support my auto immune system and have an awesome team of specialist for each disorder to keep me closely watched and on the right track. Going back to art school is really good for my overall health and well being. I work a small work study in the studios which give me a little income and allows me to keep my stress level in low gear for better health.

Flower Girl. allergy shots and/or Chiropractics where incredible for my daughter who was on some very serious maintenance asthma meds 550 advir, lots of prednisone, allergy med and singular were the final ones after going up through all the corts for a period of 10 years. Allergy Shots and Chiropractics have yielded my now 19 year old dd -- completely med free for 3 years now. Google it, it works wonders for asthma.

[snookemz]

Guess who's having a bad back week AND her period? That's right! This lucky girl!!! effin shoot me.
I went to the zoo tonight because it was member's appreciation night and my kids love the zoo. I'm just not capable of taking them alone anymore and since they're not typically open past 5, I never have anyone to go with me! Tonight they were open just for member from 4:30-8pm. It rocked! Except its 11:30 right now and I just had to take a second soma and some lortab. I usually take one or the other (depending on the type of pain) and then wait it out to see if I need the other. Tonight I want to take them all!! lol including the other various pain meds that are lingering in this house. Realistically I know I can't take more for a while (well I have some valium I could safely take but it usually doesn't help!) so I'm looking for the heating pad and getting the ice pads in the freezer - one of them HAS to help, right?

oh and out of nowhere, my braces are leaving bruises on my legs. I haven't gained weight, haven't lost any - maybe its just from the whole period crap, might be some extra swelling.

I'm gonna re-apply for disability this week. Wish me luck!!!

[romanlili]

Guess who's having a bad back week AND her period? That's right! This lucky girl!!! effin shoot me.
I went to the zoo tonight because it was member's appreciation night and my kids love the zoo. I'm just not capable of taking them alone anymore and since they're not typically open past 5, I never have anyone to go with me! Tonight they were open just for member from 4:30-8pm. It rocked! Except its 11:30 right now and I just had to take a second soma and some lortab. I usually take one or the other (depending on the type of pain) and then wait it out to see if I need the other. Tonight I want to take them all!! lol including the other various pain meds that are lingering in this house. Realistically I know I can't take more for a while (well I have some valium I could safely take but it usually doesn't help!) so I'm looking for the heating pad and getting the ice pads in the freezer - one of them HAS to help, right?

oh and out of nowhere, my braces are leaving bruises on my legs. I haven't gained weight, haven't lost any - maybe its just from the whole period crap, might be some extra swelling.

I'm gonna re-apply for disability this week. Wish me luck!!!

:hugs: mama!

I tihnk I heard somewhere that if you are denied disability it takes an average of 4 years (and a lawyer) for them to actually approve.

I hope it goes quicker for you.

[Spring]

I've pretty much decided to quit my job. She's not budging on the working from home and I'm tired of arguing about it. She did offer to let me go part time, but I figured working 24 hours a week, I'd only make $200 a week more than I was pulling in unemployment. I should be able to get it again without having to wait 6 weeks, because I was getting it while I was on admin leave and my claim is still active.

Couple that with the $7000 I can cash out of my 401K after taxes and penalties (no lectures please, I know "they" say not to do this.) and I can pay some crap off. We have virtually no bills right now so we should be able to manage on what DH makes.

I'll put my resume in at a couple of other engineering places. One at least I know lets their designers work from home (they also wanted to hire me and the other designer in my dept a year or so ago, we should have gone, :sigh: ). None are hiring right now, but things are bound to pick up soon.

I'm really feeling a peace about this.

[snookemz]

:hugs: mama!

I tihnk I heard somewhere that if you are denied disability it takes an average of 4 years (and a lawyer) for them to actually approve.

I hope it goes quicker for you.

really? I've heard 6m actually. I think I applied for the wrong form so that's probably my problem :err:

[Shaineinok]

I've pretty much decided to quit my job. She's not budging on the working from home and I'm tired of arguing about it. She did offer to let me go part time, but I figured working 24 hours a week, I'd only make $200 a week more than I was pulling in unemployment. I should be able to get it again without having to wait 6 weeks, because I was getting it while I was on admin leave and my claim is still active.

Couple that with the $7000 I can cash out of my 401K after taxes and penalties (no lectures please, I know "they" say not to do this.) and I can pay some crap off. We have virtually no bills right now so we should be able to manage on what DH makes.

I'll put my resume in at a couple of other engineering places. One at least I know lets their designers work from home (they also wanted to hire me and the other designer in my dept a year or so ago, we should have gone, :sigh: ). None are hiring right now, but things are bound to pick up soon.

I'm really feeling a peace about this.
I know it feels good to have a plan.

[urchin_grey]

I don't really know if its counts, but I have a tendency to become iron-deficiency anemic and vitamin deficient really easily. I'm also hypoglycemic. I'm not sure if I have an absorption problem or what... But it gets bad enough sometimes that I can't work, or do much of anything. I've had a rough time of it for the past week or so. For about 3 days, my muscles just kept getting more and more sore and then I started getting really weak and tired and kept forgetting things. I couldn't even remember if it was 2009 or 2010 the other day. :looky: My hands were so weak I could barely open doors and I dropped a plate at work. It just fell right out of my hand. :shakehead: I'm on B12 and iron supplements now though and I'm feeling loads better today. I still want to push for an MRI though just to rule out other things...

[MBRL567]

People often develop arthritis in places where they broke a bone. I've broken a few ribs and I get stings of pain every now and then.

how do they see if i have that? Dh actually broke my rib (umm, trying to DTD :err:) and it was over a year ago. I only had 1 xray to tell me it was broken in the ER. I have never had it re-checked. I just assumed it grew back normal and just bothered me from inflammation?

[romanlili]

how do they see if i have that? Dh actually broke my rib (umm, trying to DTD :err:) and it was over a year ago. I only had 1 xray to tell me it was broken in the ER. I have never had it re-checked. I just assumed it grew back normal and just bothered me from inflammation?

I have no idea how they check for it. :err: It's just something I learned along the way with my many injuries (I'm kind of accident prone).

[pantufla]

I have no idea how they check for it. :err: It's just something I learned along the way with my many injuries (I'm kind of accident prone).

You go back to the doc and you say "my side still hurts, ever since I broke that rib" and see what they say.

It takes up to 2 years for the swelling in the bone to go down. (I'm pretty accident prone myself.) :err:

I am another in the camp of having fibromyalgia... It was really bad when I was in college and a few years after, but I guess I learned better coping techniques. I haven't had a really bad flareup in a long time. I mean, not crippling, like I used to get. I am tired all the time. I've been thinking about this a lot lately. I get down on myself for being such a lazy mom, and then I think, these other moms who do so much, do they have fibromyalgia?

I also had surgery on my left wrist 7 or 8 years ago, for torn cartilege. The surgery was an epic failure -- my wrist was worse afterward, plus I had PTSD from being awake during the surgery. About two years after the surgery I broke it, well them, the radius and the ulna, when I fell up the stairs. (I'm thorough. I never do anything halfway.) I lost some range of motion and there are a lot of things I just can't do.

I also have severe migraines, although those have gotten much better since I started having kids. I really think the improvement is more due to getting regular chiropractic care than having kids. :giggle:

When DD was just over a month old I threw my back out. I couldn't lie down, I could barely move, I couldn't do anything for my kids, my DH stayed home from work to take care of me until he couldn't anymore and then I had a friend come help me out during the day. I couldn't drive or pick up my kids or even wash my hair. I am still dealing with the repercussions. My ribs ache and I really have to watch my activity level and how much I lift and carry.

I don't really like talking about it. I find that if I talk about it too much I focus on it, and that just makes everything worse for me.

I have had fibromyalgia since 1991.

So, disabled? Not like many of you. But I do have to be careful about how much I try to do in one day, one week, one month. That in and of iteself is exhausting.

[Oherin]

I have ocular shingles in my right eye. Somehow being pregnant suppressed my immune system in such a way that I broke out with shingles...which happened to be in my eye. I take daily suppressants and can have flare ups if I don't get enough rest or too stressed out. During a flare up, I become incredibly light sensitive...no driving, no reading, tv, computer. Think sitting in a dark room with sun glasses. Right now, my eye is clear, but it feels weak all the time. Once I stop breastfeeding, my flares ups should be easier to manage.

[jaazavala]

I have Nuro Cardiogenic Syncope. That basically means I have really low blood pressure and I can pass out from it. Since my blood pressure is so low I have a high heart rate to try to keep the blood pressure up which makes me VERY tired. There really isn't any meds to get your blood pressure up, so they prescribed salt. I need about 10hrs of sleep a night and I still feel tired all day. People do not understand what it feels like. I am not lazy I am tired. Sometimes I feel sick from being so tired. I am not supposed to have caffeine since my heart rate is already so fast. When I don't get enough salt I get really dizzy. My joints hurt a lot to. I was tested for arthritis but that came back neg. I think it is from the lack of salt in my bones. If you do not get enough salt in your body it will take it from your bones. I get really stressed out and I have social anxiety. I get disability for it. I have a hard time finding "ME" time since I have to go to bed when the kids do and I don't get up until they get up. I have a bad back which causes me a lot of pain. I have a hard time sleeping from it. I feel great when I go to the chiropractor but I cannot afford that anymore. I grind my teeth when I am sleeping from the pain. It is in my hips, back, and neck. I also had surgery on my wrist 5 yrs ago that is now causing me pain again. I had a cortisone shot that helped some but now my hand is discolored. I though that with the cortisone shots the discoloration when away but this did not even appear until a month after the shot and it has been there for about 2 months now.

This thread is great. It helps a lot knowing I'm not alone and I have someone to listen to me complain.

[jaazavala]

I just found this at hrtcare.com I was diagnosed at 17 so that was 8yrs ago. There is a lot on new studies that they did not have back then. I think I am going to ask my doc. about some of it.


What Symptoms Does Neurocardiogenic Syncope Cause?

Individuals that are prone to neurocardiogenic syncope manifest a spectrum of symptoms ranging from fatigue, vague lightheadedness, recurrent dizziness, near fainting, palpitations, nausea, unexplained sweating, joint or muscle aches, to the most dramatic "the faint". Some people may only have one or more of these symptoms but never progress to fainting. Prolonged fatigue after a modest amount of physical activity is occasionally seen. This post-exertional fatigue can last 24-72 hours, and interferes with many daily activities.

Some develop worse fatigue after such activities as reading and concentrating, and this may be due to the fact that for some, the veins of the arms and legs dilate, thereby allowing more blood to pool, rather than constricting in response to mental tasks.

What Causes Neurocardiogenic Syncope?

The cause for neurocardiogenic syncope isn't well understood at present, but we suspect this condition has genetic origins in many people, because it is not uncommon to find several affected individuals in the same family. It is likely that we all could develop this neurally mediated drop in blood pressure provided that the conditions were sufficiently severe: for example, if we were dehydrated, were subjected to extremely prolonged periods of upright posture, or to very warm environments. The reflex response, which results in lowered blood pressure, simply occurs more easily and without an apparant trigger in susceptible individuals.

One of the most common and treatable problems identified in those with neurocardiogenic syncope is a low salt (sodium) intake in the diet. Salt helps us retain fluid in the blood vessels, and helps maintain a healthy blood pressure. For individuals with neurocardiogenic syncope, a low salt intake may move them from feeling good to developing the symptoms of fatigue and lightheadedness described earlier.

No, treatment for neurocardiogenic syncope does not cure the problem. Rather, it helps control (minimize if not eliminate) symptoms and is aimed at improving quality of life. When medications are stopped and when salt intake is reduced, symptoms frequently reappear. Many of the adolescents and adults with the problem also have symptoms resurface or worsen at busy or stressful times (making an oral presentation in class). Many women describe a worsening of symptoms in the days around the start of a menstrual period.

The question of what happens over the long term has not been adequately studied, and the optimal duration of medical treatment is still being worked out. Unfortunately, despite appropriate doses of the available medications, some individuals with abnormal tilt table tests do not experience a marked improvement in symptoms, and some are intolerant of the medications. In such people, the realistic expectation may be reduction in frequency and severity of symptoms rather than their complete elimination. More research on this problem is ongoing.

[dubhreubel]

Definately ask your doctor... I'm a huge believer in being involved in your medical care since not every doctor can know everything about everything lol

[Naturallia]

I'm deaf, among other things.